

To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.

FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.

There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Education is our Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Our webinars and other contents are designed to empower individuals to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
Latest Blog Posts
Partners in Pain, Harbingers of Hope
It was a chance meeting in the valley that divides my Galilean kibbutz Hannaton from the Bedouin village of Bir al Maksur that planted the seed for the storyline of my debut novel, Hope Valley. I was out walking my dog when I saw Hussein, a shepherd who frequents the valley, out with his sheep….
Arrowhead Pharmaceuticals announces FSHD drug candidate
Arrowhead Pharmaceuticals, Inc., a Pasadena, California, company, today announced ARO-DUX4 as Arrowhead’s first muscle targeted investigational RNAi therapeutic candidate. Using the company’s proprietary Targeted RNAi Molecule (TRIMTM) platform, ARO-DUX4 is designed to target the gene that encodes human double homeobox…
Upcoming Events

The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. Your participation is vital to ending the suffering caused by FSH Muscular Dystrophy (FSHD). There are many ways you can get involved and play an active role.